MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Dear Rick,I cannot describe what I feel! This is absolutely astounding and great! Thank you: thank you so much. I don’t know what to say: It's another year and I'm still cancer free after some years I think I’ll have to let this fantastic news “sink in” in my brain a little: I’ll keep on thanking you again and again.It's like Magic i am CANCER FREE I have never been more amazed and happy in my life! Contact him directly at his email: for your own oil.
May GOD Bless you all! Yours truly,
Novoa Mendez

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 The Lap-Band procedure, though safer, has slower weight loss than new forms.Also, your exercise routine and the foods you  Genius X eat will with be responsive your weight loss result. It is essential to follow the diet plot unconditional to you and to exercise mysterious for the maximum weight loss. Most patients can expect to lose just very more or less 36 percent of their excess body weight within the first year.


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keepthefaith11's picture
Replies 4
Last reply 2/12/2016 - 10:59pm
Replies by: Anonymous, Bubbles, Johnjk04, gregor913

My father started Yervoy today. Nice to get the ball rolling. When speaking to his onc last week she said radiation was in the treatment plan and I mentioned reading about doing immunotheraphy and radiation simultaneously. At the appt. this week she agreed that would be a good way to proceed. They are currently working on the mapping for radiation and as soon as that is done radiation will start. Does anyone have experience with combining the two treatments? Seems there are some good studies saying this could be a benefit.

My father is stage 3C with extracapsular extention in 2 nodes, and micromets in 2.



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First time posting here but I have been reading while we waited on our daughter's biopsy results.  I was wondering if someone could help me understand them?

The diagnosis is atypical mole but the description has me wondering if there was some question about it?  I don't know what spitzoid features and architectural disorder means; Googling for more info just leaves me confused.

It started out as a tiny, tiny freckle and over the course of about six months, grew larger and changed shape and color.  We live in Houston and because of her age and the need to remove it under general anesthesia, we opted to have it done at MD Anderson.  I would like to feel confident in their assessment - and I mostly do - but also am looking for feedback from those who are more familiar with these words than I am.  It reads:





Melanocytic nevus, compound type with spitzoid features and architectural disorder, present at a peripheral tissue edge. Clinical-pathologic correlation is necessary to determine if this is part of a larger pigmented lesion.
Multiple step sections were examined.

This case was studied and discussed at the dermatopathology faculty conference.




(A) GLUTEAL FOLD NEVUS - A tan-white punch of skin measuring (0.4 x 0.4 cm, excised to a depth of 0.3 cm). On the surface of the skin, there is a (0.3 x 0.1 cm) dark-brown possible pigmented lesion. The deep and peripheral aspects of the specimen are bisected. The cut surface is tan-pink and rubbery. Entirely submitted in cassettes A1 and A2.




Atypical nevus. 


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Anonymous's picture
Replies 1
Last reply 2/12/2016 - 10:04am
Replies by: jpg

High-Dose Interferon No Benefit in Melanoma With Single Positive SLN - See more at:

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 0

Found this book helpful and it has Dr. Flaherty and Dr. Wolchok as writers too.  The emotional support part is good too.

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cece's picture
Replies 4
Last reply 2/11/2016 - 4:30pm
Replies by: cece, Janner, slatman


I was diagnosed last year with stage 1B (0.8mm, no ulcertaion, mitotic >1). The dermatologist I was seeing at the time told me it was nothing, despite my long, long history of atypical moles and having voiced my concerns to him about it being darker than other moles and scabby. I went back because it was still on my mind and sure enough, it was melanoma. Always be your own advocate!  Anyway, about ten years ago, I had two pinkish moles removed that turned out to be spitz tumors, both on my legs. They had been there as long as I could remember. There's not a lot out there on spitz tumors, other than that back in the day doctors called them "juvenile melanomas." Has anyone heard of a connection between spitz tumors and the chance of developing melanomas at other sites on the body? Also, does anyone have experience with the genetic testing to see if you have a gene that indicates you (and your children) are more likely to develop melanoma? Does insurance usually cover this test? I hear a lot in the new about the breast cancer and ovarian cance gene test, but not so much about the melanoma one.


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Anonymous's picture
Replies 4
Last reply 2/12/2016 - 10:50pm
Replies by: Anonymous, Scottw, JuTMSY4

My wife is currently Stage IV and has recently completed her fourth round of the combo. At her recent CT scan, about 15 weeks into treatment, she had mixed results; some spots stable in lungs and liver, but several new spots have appeared in the skin. From discussing with our doctors, most response is occurring within the initial 12 weeks or so. I was wondering if anyone here on this combo has 1. had an experience where it took longer for the treatment to have an effect and 2. experienced new spots appearing before the drugs began to work? We are investigating other treatment options and trying to determine how long to continue with the combo before trying something else.

Appreciate any insight you can share on your experience being on the combo.

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Angsta39's picture
Replies 2
Last reply 2/10/2016 - 6:36pm
Replies by: Angsta39, jamieth29

Went to see derm in December and pointed out two red bumps that had come up quite suddenly a few days before my appointment close to my original site. Derm did a biopsy and it was melanoma. Since then, I have see oncologist and melanoma surgeon and they have numbered and taken photos of the new bumps. When I saw them on 1/26/16, I had 12, and when I counted them two days ago, there are 32. I am sceduled to start T-VEC injections for each lesion at the end of this month. I was wondering if anyone else has had this done and what kind of side effects I may be in for, like can you drive yourself home after the injections, etc.

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jennunicorn's picture
Replies 8
Last reply 2/11/2016 - 7:54pm

Had my 3rd infusion on January 25th. I continue to have very little side effects, yay! I know I am not out of the woods yet, but I am so glad that this is going a lot smoother than it could go. I continue to have fatigue, very manageable. I got a cold last week, so I am dealing with this annoying cough that is getting a little better every day, but still very annoying. The eczema flare ups on my hands has even gotten better. After the first infusion almost every morning I had to use my steroid cream to calm my hands down. Now, it is barely there. There was one morning last week that I had some diarrhea and worried that I was going to have to deal with that side effect. But, it only happened twice that morning and went back to normal, so must have been something I ate. I do hate that if something like that happens, I instantly worry that it's a side effect. 

I hope everyone else on ipi is doing well too and have manageable side effects.

Infusion 4 is next week, the 18th. Thankfully these weeks have been going by very quickly and I am looking forward to getting back to work full time and going on with my life, not worrying about my next infusion or whether what I am experiencing is a side effect that needs medical attention. 

Wishing everyone out there the best in their journey. 


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Rita and Charles's picture
Replies 5
Last reply 2/10/2016 - 11:07am

Had another PET scan yesterday, as well as blood tests.  No result yet on PET but the blood shows higher LDH......his have been traditionally around 400........I am so uneducated on what LDH indicates, what is a good number , what is a scary number - can anyone share your knowledge?



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Maureen038's picture
Replies 10
Last reply 2/10/2016 - 5:02pm

Hi All,

    My husband has been stage 4 for three and a half years. He has had many treatments and he was almost NED last spring from the Ipi/Nivo trial when he had two new lung nodules. After seeing several top melanoma specialists only one had a novel idea. At Sloan Kettering they are using old chemo drugs that are showing results especially after using a pd1 drug. Bill had two pill doses of DTIC and while he had very good scans, he was in the hospital for 9 days due to neutropenia. After that we found out he had the her-2 mutation which is extremely rare in melanoma. He has had 2 infusions of TDM1 which we have had to pay for out of pocket because it's not FDA approved for melanoma(very, very expensive). We just had his first scans and we are so thrilled that his lung nodules have shrunk and his fluid in his lungs have gone from moderate to mild. We are SO thrilled and feel that you should always keep fighting!!! We know we're not out of the woods, but we feel so happy that we have made progress. Life is so precious and we plan on living each day fully!!!! We wish all of you the best!!


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Replies by: BrianP, Bubbles, nlac26, Mat

Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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DZnDef's picture
Replies 11
Last reply 2/11/2016 - 7:30pm

Hi all,

Can anyone list for me the various brain radiation techniques?  I've seen the following tossed around on this site:  SRS, WBR, Gamma knife, Cyber Knife (am I missing any)?  Are these all different techniques or are some of them just different names for the same technique?  Thanks in advance for your help!

Maggie - Stage IV (lung mets unknown primary) since July 2012

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bajohnson02's picture
Replies 19
Last reply 2/12/2016 - 12:09am

Hi everyone..

I am 43 year old female, recently diagnosed with malignant melanoma located on top of my foot. It's a place that has been there for about 8 years. I was told by 2 different doctors who just glanced at it that is was nothing to worry about. So, I kinda brushed it off and let it go. In Jan this year I decided I needed to find a new family doctor, I showed it to him during my 1st visit and he thought we should biopsy it to be on the safe side and so that I could put it behind me and not worry about it anymore. The first biopsy was a small piece that came back as severely atypical melanocytic and recommended full biopsy. I went back in a week later to have the full biopsy done and received 6 stitches to close it up. That was on January 27th. I knew when I received a call from my doctor himself instead of one of the office ladies that it must be something serious. He proceeded to tell me that it was melanoma and was referring me to a surgical oncologist. I got a copy of my pathology report.. But, I am not so sure how to understand it. I feel like its been a roller coaster with my emotions since I got the call. I don't know what to expect or what the outcome is going to be.. I am scheduled this Friday with the oncologist for WLE and sentienel lymph node biopsy. From what I have read it won't be until after that is done that they will be able to tell me the stage. I am hoping that someone here can shed some light to what I am looking at, I will share with you some of whats on my path report. 

Superficial spreading

Clark's level 4

Breslow depth 1.4

Vertical growth (tumorigenic) Present

Host response- Brisk

Regression- Absent

Misosis- 1-2mm

Ulceration- Absent

Predominant Cytology- Epithelioid

The comment sections states- 

Multiple sections have been examined

Melanocytic marker shows focal prominent pagetoid dispersion. Cytologic atypia is prmoinent.

Ki67 stain show slightly increased activity.

Wider re-excision with adequate clear margins and staging, along with sentinal lymph node biopsy are recommended.


Any help in understanding what I may be up against would be so much appreciated.. my main concern it how long it has been there that it may have a greater chance of spreading. Thank you so much for any info. God Bless!! 

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